Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Thursday, May 12, 2011

So sorry my precious Angel

Hello my precious little boy. Today is a really tough day for mommy, you had another seizure when I was bathing you last night, the third one in a space of three weeks, and each time it has been when I have had you in the bath and I figured out last night that either it is really a very bad coincidence or its mommy's fault and I am definately leaning very strongly towards it being mommy's fault.

Although you love your bath water to be a bit warmer than luke warm, I think mommy made it a little too warm. You didnt complain or change your breathing pattern when I put you in the bath, you were perfectly fine. By the time I had washed all the soap of the front of your body and leaned you back to get your head in the water, it started - happened the same way every time !!!  I think it takes a little while longer for your little brain to process that the water is a bit warm, but then again, you also have SUCH a high pain threshold (just like your daddy I might add) that I had no idea. It felt normal when I put my hand in the water, but obviously it wasn't.

I am feeling so guilt and terrible that I put you through that. That my little boy had to really battle and whats worse is it took a bit longer than normal to come out of it. I felt so helpless and stupid. As hard as I try, I can't stop thinking about it and keep crying. My heart is so sore, not for me but for you. You have been through so much already and through my stupidity I put you through more. Mommy is so so so SORRY my baby. At the moment I feel like I just dont want to bath you ever again, I am so scared it happens again.

You didnt have a bad night last night, but mommy's guilt kept me awake most of the night and because I am really tired today, I am battling to deal with it. Maybe I am just being emotional but I think this is going to be a big one for me to get over. I just dont know how to start the process. I know I cant always do and get everything right or perfect but this is one that has no excuse.

So so sorry my little pumpkin.
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1 comment:

  1. KulaniMay 16, 2011 at 8:10 AM

    Hugs Kim-tree,be kind to yourself.Atleast now you know what temperature water Lior enjoys.

    ReplyDelete

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